Privacy & Ethics

Preserving privacy and maintaining robust data governance are of critical importance to the CHeReL.  All research projects using linked data must obtain approval from the data custodians and a human research ethics committee.  The CHeReL also complies with best practice in privacy preserving record linkage, adopting the Kelman, Bass and Holman approach.  This involves separating the linkage of personally identifying information from the analysis of de-identified linked health records.  The CHeReL holds and links personal identifiers only and uses a system of numbered "keys" to exchange information with data custodians.  The CHeReL does not provide linked records directly to researchers, as we do not hold health information.  Data custodians retain control of the information that is provided to the CHeReL for linkage and for provision of de-identified linked records to researchers.

This approach to preserving privacy and data governance has been strongly supported by organisations that are custodians of health records, human research ethics organisations, researchers and the community.  By providing a mechanism for researchers to access de-identified linked data, the CHeReL enables ethically approved research in the public interest to be carried out without consent, minimising bias and allowing researchers to access data on whole populations.